I've honestly come to this forum so many times over the last few years wanting to just have a talk about my feelings and the s****y things that have happened to me, but I never know where to start. Also, everybody seems to be using the forums for practical help and information. Well, from day 1 I never struggled with any of that. There seems to be such a paucity of information that it took me all of 2-3 days to get my head around all of it to the extent that I'd diagnosed myself, treated myself and told my GP how to go about putting in the referral all while taking a few days off work with a virus.

What I don't have is any kind of support for weeks like this week when everything is getting on top of me.

I'm also completely in the closet about my condition.

I don't have a massive issue with telling people what's wrong with me. Occupational health always know, all my doctors know, plus on occasion I've told the odd person in my life ... but only if they are completely separate from everybody else in my life and I feel I can keep them that way. And therein lies one of the crucial problems. I feel like I appreciate what it must've been like for gay people many decades ago, because if you 'come out' about something (be it sexuality, or, like in my case, a medical issue), you really are out. Word will get around. It's then a race to tell everybody close to you before they hear it 'through the grapevine' and you end up having the same humiliating conversation over and over and over again - and then everybody knows. Even the people you don't want to know. Which has pretty much stopped me from telling most people about TMAU. (And okay, I must have some issue talking about it, because right there I deliberately avoided the possessive pronoun. It's just TMAU, not 'my TMAU'. It's not mine, it's a disgusting thing associated with me, but it's not part of me, etc, etc.)

Anyway, I'm not sure I can even tell you why I'm depressed at the moment. It's a combination of things, not all TMAU-related. I tried different antibiotics recently and they didn't work, so that's been an exacerbating factor. I now have to wait a month before I can go on something that works, and I feel like my usually polite colleagues have finally gone the way of my many past colleagues with their dirty looks to each other in my line of sight and rude remarks that they don't quite manage to keep out of earshot. I'm tied in to what I'm doing occupation-wise for the best part of another year, and it's starting to feel a bit samey. Oh, and I'm also in love with somebody who I just found out has a minor crush on me, but who I'm trying to keep at arm's length because I gave up on sex and intimacy years ago after all the stress it caused with my ex partner (who was perfectly happy to sleep with me night after night, but would never kiss me because he thought my mouth tasted like garlic. Which, to be fair to him, was probably a very polite version of the truth). That's awkward and stupid as hell at my age, but there we have it. Another ridiculous facet of my ridiculous life.

Another reason I've avoided posting on here with a massive moan, is that every time I come on I'm reminded of how much worse some people have it. Here I am moaning because my wonderful, polite colleagues are being slightly less wonderful and polite - even though there are people on here who struggle to leave the house or stick with any kind of job for more than a few weeks. Honestly, if I told you what I did (and believe me, I can't, it would make me instantly identifiable in a career where I have to guard my personal information at the best of times) you wouldn't believe me. What I'm doing is extremely competitive and very hard work, and I literally fought my way past hundreds of normal, healthy and very driven competitors to get here. Yet because of that - because of all that, and so much more - I *want* to stay here. I want this lonely, hard little life that I've carved out for myself, because I am tired of getting so far with things and giving up because of the stress. I feel like I deserve what I have, but I also feel like people around me deserve better than to have to put up with me all day every day. It's so hard to know where the balance is.

Anyway ... there. I finally did it and used the forum to get all of my whiny issues off my chest. Haha.

Anybody want to join me and use the forum for moaning? Or is everybody more healthy and well adjusted than me after all?

Don't feel you have to reply. I've got a busy fortnight coming up as of today, so if you do I might not get back to you right away.

Oh, and as a parting thought, don't let ANYTHING I've said get YOU down. This is how I feel, and - bar the fact that we happen to share a medical condition - we are probably all very different from one another. So you guys go out and find the best lives for you, and let me worry about mine. As you can see, I'm doing a lot of that right now.

I could have literally written parts of that myself ,it's nice to read someone feels the same ,I've just been in the hospital with my daughter,and we had to stay overnight which I was dreading of course I was trying to concentrate on her ,but tmau reared its ugly head I'd practically starved myself these last few days ,and I got the whispers from the nurses one said out loud I know it's crazy , another shouted when I walked past " brush your teeth , everyone else was in bed and I'd just scrubbed myself in shower and brushed my teeth tongue mouthwash etc even took charcoal ,I'm dying inside because it makes me feel like a lepor,the mum opposite sprays deodorant into the air ,and every time I smile at the nurses they look at me in disgust ,when I got up in the night my window was the only one open out wide ,they sent us home no one really spoke to us but did everyone else ,I thought about saying something to a nurse but I think why should I apologise ,but I hug my daughter and I teach her never to treat someone bad , people can be so cruel tmau sucks

I commend you for your bravery. Like you, I suffer with TAMU. I can understand the torture of trying different treatment options but still be plagued by the disease. My family and close friends know the extent to which I go to keep my surrounding and self clean and welcoming but this condition can present such an abhorrence. Activated charcoal followed by copper chlorophyllin about 5 hours later sometimes work for me, but the charcoal results in constipation. I commend you for the efforts in minimizing the odors and encourage you to believe that soon there someone will develop some form of effective therapy.

Thanks so much for your post. It really makes a difference to know that other people are going through similar things and want to talk about it.

Oh my goodness, I know what you mean about hospitals! I had to visit the hospital in the afternoon a few weeks ago (not for TMAU; for another reason), and, well, let's just say my metabolism was not behaving itself. I was a bit early, so I thought I'd find the canteen and try to dilute some of the amines by downing a bottle of water. I was sitting by the window with my bottle, minding my own business, when a table full of care assistants and hospital cleaners started complaining about me loudly. Then they started moaning about one of their old patients so that other patients and visitors could hear them. They were saying that she smelled bad and so did her daughter. Every time the daughter came to visit they had to spray air freshener, and one of the cleaners was saying he avoided the room, especially when the daughter was visiting. I know these are people who take the jobs because they have no qualifications and can't get any other work (unlike nurses and physios etc who WANT to work with patients), but that's still a really horrible attitude for people who work in healthcare. They're the ones who are supposed to still care about you when the rest of society doesn't.

A similar thing happened years ago, but with a qualified dentist - so absolutely NO excuse there. I was waiting for the dental hygienist in the waiting room with another (really friendly) lady, who was also waiting her turn. The dentist came out to look for some notes, and started laughing and making rude jokes about me with the receptionist. Then she strode into the waiting area, and sprayed air freshener loudly and ostentatiously about ten inches in front of my face. It was roughly 3pm, and I knew I'd eaten something stupid the day before, so I had literally starved myself all day & the fumes made me feel dizzy. The friendly lady looked confused and said she had no sense of smell anymore. The dentist gave a smirk and said 'Oh, don't worry, it's not YOU,' before flouncing back to her room.

I could go on. I have dozens of these stories. I'm worried they are sounding a bit angry, though, which is not my intention. I don't think I feel angry, just think it's healthy to talk about stuff like this when half the world treats you like you're not A Real Person. Sometimes it's easy to just go with the majority and believe you're not really human & don't deserve the same life and privileges that Real Humans have. I don't think that's true, though. Like I said before, it's just hard trying to strike a balance between what I deserve and want from life, and how much others deserve to not be subjected to me all day every day. It's such a difficult balancing act. I keep thinking I should try and do more work from home, but lately I just feel low and want to sleep when I'm at home, so I'm not sure it's going to work.

I'm really sorry to hear that your daughter has been sick, by the way. I hope she is alright, and that you are coping okay.

Thanks for your post, B. I suppose we should be grateful we have the charcoal, copper chlorophyllin and diet, etc. Every new treatment that comes along will minimise it a little less. Sorry to hear that about charcoal and constipation. I can't say I have that issue...